Maya’s Story: Living with EB

January 2023

 

The cushions laid out against the brightly painted walls disguised the little girl sitting amongst them. Her patchy, blistered skin was almost camouflaged against the busy patterns inside the dark, empty room where she spends her days.

A sprawling gathering of makeshift structures – temporary shelters that have, years later, been transformed into semi-permanent homes – one of several camp’s set up to temporarily accommodate internally displaced people is incongruously situated in a vast area of arid land, seemingly detached from society and the world outside. Located near the city of Duhok in the Kurdistan Region of Iraq, the camp is where ten-year-old Maya calls home. Originally from Sinjar in the Nineveh Governorate of northern Iraq and the traditional homeland of Iraq’s Yazidi population, her family was among thousands of Yazidis who were forcibly displaced from their home when Islamic State militants seized control of northern Iraq in August 2014. Almost a decade later, they remain living inside a camp with little hope of returning home.

Maya suffers from a rare, genetic skin disorder called Epidermolysis bullosa, or EB, a cruel disease that causes her skin to become extremely fragile. Even the slightest friction can cause painful liquid-filled blisters to form on her skin.

I found out about Maya’s case in August 2022 through a social media post shared by a friend of mine, Dr. Mohanad, an Iraqi pediatrician who has been supporting Maya via his local charity, Help Me Live.

Unable to walk or go to school or play with other children due to her condition, Maya spends her days sitting inside a small room in the camp, in constant pain.

 

WARNING: Some of the photos below are graphic and may be disturbing.

A camp for internally displaced people located in an area of arid land near the city of Duhok in the Kurdistan Region of Iraq.

What is EB?

‘Epidermolysis bullosa, or EB, is the name of a large group of clinically and genetically different diseases. Their common feature is the formation of blisters. Blisters form from low mechanical stress on the skin and/or mucous membranes. There are a number of sub-types of Epidermolysis bullosa that differ due to the skin layer in which the blisters are formed and what exactly the genetic cause is.

The human skin consists of several layers. The epidermis is the outer most layer, which is the “outer skin”. “Bullosa” means “bubble-shaped” and “Lysis” solution. Therefore, Epidermolysis bullosa is literally called “bubble-like detachment of the epidermis”.’

(Source: EB-Haus)

Unable to walk due to the constant pain she suffers, Maya clings onto her mother who cares for her.

There is no cure for EB, but it can be treated. That treatment, however, is costly, especially given the severity of Maya’s current state.

Sadly, Maya’s family are unable to pay for the medical care and pain relief she needs to live a more comfortable life. When I asked her family what pain relief she’s taking, they told me her only pain relief is her mother.

In October 2022, I travelled to northern Iraq to meet Maya in person. I was shocked and heartbroken to see her in so much pain.

With her and her parents’ consent, I took some photos of Maya to help raise money for the costs of her much needed medical care. A few weeks earlier, I’d created a GoFundMe with an initial goal of raising £3,000 to help with her urgent treatment.

After sharing some of the photos I took of her on social media, within 24 hours the fundraiser had reached over £7,500. It’s now up to almost £10,000, which will go a long way to providing the dressings and specialized medical care she so desperately needs.

Maya will need constant and ongoing treatment for life at an estimated cost of $1,500 per month, which includes special gauze strips and dressings, bandages and ointments to help alleviate her suffering and aid her skin in healing.

Inside the camp for internally displaced people where Maya lives.

In summer, Maya’s condition is exacerbated due to the extreme heat that’s impossible to escape in the camp due to limited access to electricity. In winter, she struggles to stay warm enough.

Maya sits with some of her siblings and other relatives who live in the camp.

If left untreated, Maya’s wounds would become infected, which could lead to potentially fatal sepsis.

When I asked Maya what toy she would love to have, she said a children’s car to ride around in. A shy smile crept across her face when Dr. Mohanad showed her a video of his son riding a small battery-powered car.

According to Dr. Mohanad, one of the most important things that Maya needs is something to do. “She’s had ten years without doing anything, just sitting,” he says. “She’s not even watching TV.. .She really needs something to do.”

Dr. Mohanad and Maya's father carry a children's car that's a gift for Maya.

In December 2022, I returned to Iraq to visit Maya and to deliver the funds raised. Thanks to the many generous donations, in addition to covering the cost of her treatment we were also able to buy her the battery-powered car she dreamt of having, as well as a few other small Christmas gifts.

For Maya, the car is so much more than a toy. She’s in too much pain to walk so the car will give her some mobility to move outside and hopefully play with other children.

Seeing her ride around with a beaming smile brought tears to my eyes.

Maya smiles while enjoying her new coloring book and pencils.
Maya and her younger sister enjoy coloring in books inside their home in the camp.

Maya’s father plays a musical instrument inside their home in the camp.

In June 2023, I visited Maya again and I’m very happy to share the news that she has improved dramatically since we began raising money for her medical care. Dr. Mohanad and I were both extremely moved to see her looking so much better, and wearing a bright, cheerful smile.

Since we started raising money for Maya’s treatment, the donations we’ve received via GoFundMe have enabled us to provide the medical supplies she needs to treat the painful blisters that form on her extremely fragile skin. With ongoing and constant treatment, her condition can be managed, although sadly not cured, and she can have the chance to live a more comfortable life.

We were also able to provide her with an iPad and coloring books to help keep her engaged during the days since she cannot go to school.

I’ve been overwhelmed and moved by the compassionate and generous response to Maya’s fundraiser.

I’m reminded of the extraordinary power of photography in drawing attention to a particular issue or crisis, and sometimes translating emotions into actions that can have a positive impact.

A heartfelt thank you to everyone who has shared, supported and donated – your kindness and generosity has helped put a beautiful, bright smile on this little girl’s face.

We are continuing to raise money for Maya’s ongoing care.

Thank you.

Donate to Maya’s treatment fund